#18538 09-06-2005 11:32 PM | Joined: Sep 2005 Posts: 28 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2005 Posts: 28 | My name is Nigel and just introducing myself. I am Nigel and I am recovering from treatment after being diagnoised with SCC of the left tonsil in May 2005. I am 41 and live in the UK.
What follows was the tonsil removed, wisdon tooth extracted, 32 lymph nodes removed, only one found to be containing SCC and 2 doses of cisplatin with 33 doses of high intensity radiotheraphy.
It is now 3 weeks since radiotheraphy finished and I pleased to say I feel 100% better than I did when I left hospital 3 weeks ago. I feel 5% better everyday.
I got myself in a bit of pickle with eating in the last few weeks of RT ended up with a NGT being fitted at my request to ease eating and take away the pain. I have lost 13kgs but to be honest had that spare to lose as I packed on weight during the spell between RT and the neck disection after advice that I would lose a shed full of weight. Does the weight ever come back?
Three weeks after the RT the rash is disappearing, the tiredness is going, I can eat, my weight has remained constant for 2 weeks and my taste buds have come back and functioning at 80% Food if it is the right texture does go down well and very few side effects to eating the usual soft food. To be honest I feel relaxed, chilled, and well, is this normal? The only downside is lack of salvia, particulary at night, any suggestions here? I have no pain, except when I yawn! which is not so often as I was. i can drive and starting today I will walk a mile a day, to keep my muscles in trim, after all I have run half marathons before.
Three weeks ago I could not talk, had to write things down and now my speech has returned to 95% I have through the last 6 months said follow your body. My body is saying you are getting well!
I know everyone is different and have seen stories of people lying in bed after RT unable to move for 6 weeks. I have also seen reports of people who have been up and on their feet after 4 weeks and resuming normal life is this true.
I have always done what my body told me, its telling me move on with life now, I have talked about a return to work date in October 2005 which is great as it gives me something to aim at. I am taking each day as it comes and am chilling after all there is one more Cricket test match to go!
I am concerned that I am recovering quickly, I am sensible because I will not rush things but advice on recovering, things to relax and soft foods to eat would be more tha helpful.
Many Thanks
Nigel
Steeplechase
SCC Left tonsil removed, T1N2/3 May 2005, left radical neck dissection and wisdom tooth removed, 32 lymph nodes removed, 1 infected. 33 Fractions of RT, 2 doses of Cisplatin and a NG tube for 4 weeks! Treatment ended Mid August 2005.
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#18539 09-07-2005 03:45 AM | Joined: Aug 2005 Posts: 20 Member | Member Joined: Aug 2005 Posts: 20 | i also was dignosed with scc at 40 and am 41 now. i had 30 imrt radiation treatments first and am now in line for a neck dissection sept. 21. i had a relatively good experience with my radiation and may need more after neck dis. taste for salty things came back quicker but sweets and anything with vinegar tastes awful. i'm somewhat like you in that i am feeling good and am almost waiting for the other shoe to drop. i am at peace with my situation and my wife and three kids are a big part of that. i also have been able to help other people in my community that have been diagnosed since mine. i wish you well and know that you are not alone in this. i will close by the best advise i can give you, don't lat yourself be in the company of any negative people,period. | | |
#18540 09-07-2005 03:39 PM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Nigel.... you are the perfect example of the promise of IMRT radiation vs. the blast that those of us 5 years ago got. You are moving quickly through the process and back to a normal life. I hope that your experience becomes the new norm for patients going through treatment. Thanks for you posting here; it is a good balance to the tough process that many of us pre IMRT patients post about, and good for the newcomers to hear. Welcome to OCF.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#18541 09-07-2005 03:39 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Wecome Nigel
Glad you are doing so well after your treatment. I have found this whole site to be full of information for all stages of treatment. People here are so supportive and offer advice with grace, understanding and humour.
I am very impressed that you can walk a mile. I certainly couldn't have done that for a long time out of treatment. Listen to your body if you become overtired. Radiation affects our bone marrow and therefore our blood.
You are doing so well, please update us as you improve.
Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
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#18542 09-07-2005 03:53 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Nigel, my husband's Imrt therapy ended July 8th. While he is 63 and not in as good physical shape as you are, he is doing well and eating well[with only 4 teeth left]. We do lots of homemade soups with beans, fresh veggies, chicken stock, mashed potatoes, fish, risottos,steamed brocalli, asparagus tips, spinach, turnip greens,sweet potaotes etc. and lots of butter and gravy. Best luck to you. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#18543 09-07-2005 08:14 PM | Joined: Sep 2005 Posts: 28 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2005 Posts: 28 | Thank you for all your support - I woke up today and this site has given me inspiration. I have read the stories of peoples own battles and it has given me strength. This is the best site for information and support on the web. I was concerned though my plan to go back to full time work in 25 days is ambitious, but its 25 more days remission and I have a holiday in my beloved camper van booked starting on the 17th September until the where I plan to do nothing. I am lucky I will be wiith my sister and her husband in their own motorhome but so excited by the prospect it is untrue. I never though I would be able to feel so good about me and the future in such a short space of time but everyone is praising me and it is hard to accept! Has everyone else had this problem, recovering quickly and people praising you and finding it hard to accept? It was a sort of starnge feeling ill people cannot go on holiday they have to stay at home and fret, this site has given me the inspiration. I will become a daily visitor and dedicate my time to helping others. I have my first joing had and neck clinic review on the 26th so a big day for me but still 18 more days of recovery. Thank you again. PS: Weight static, blimey I am slim again  Now thats hard to accept.
Steeplechase
SCC Left tonsil removed, T1N2/3 May 2005, left radical neck dissection and wisdom tooth removed, 32 lymph nodes removed, 1 infected. 33 Fractions of RT, 2 doses of Cisplatin and a NG tube for 4 weeks! Treatment ended Mid August 2005.
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#18544 09-08-2005 01:38 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Hello Nigel! Good for you. You sound like you are dong so well....accept those compliments, from the sound of it, you look great! Love your positive attitude....I think it is wonderful you will be able to return to work so soon. You have bounced back wonderfully, God Bless and Take Care, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#18545 09-08-2005 10:46 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Nigel, Glad you are doing so well. You didn't say what kind of work you do so it is difficult to say whether 25 days is enough recovery time. I'm a programmer and went back to work 8 days after first neck dissection(bad idea) and three weeks after radiation, but it was also around Christmas so it wasn't full weeks until after new year. The second time, I decided to treat myself and sat on the beach for 8 weeks after the surgery. My body was happier and so was I.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#18546 09-08-2005 03:30 PM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jul 2005 Posts: 150 | Hi Nigel! My father is being treated for the same cancer that you had. He had 3 Cisplatins and has 3 more radiations left of 35. Thank you so much for posting, I will look to you for inspiration and share with my dad. I am SO happy that you are doing well!
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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#18547 09-08-2005 03:40 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | Nigel, You are the man, or at least the bloke!
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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